Rarely do advance directives clearly dictate the care that should be given to a patient who lacks decision-making capacity. Generally, some interpretation of the document is required, a responsibility left to the named surrogate decision maker, other family members, and the healthcare team.
When a patient who has an advance directive lacks decision-making capacity and is seriously ill, the healthcare providers should discuss the situation with the named surrogate and other appropriate loved ones. Reviewing the advance directive, those involved should decide what they think the patient would have wanted under the current circumstances. People who are not used to working with advance directives often misunderstand them. For example, an advance directive may state that life-sustaining treatment should be forgone but mention only the scenario of permanent unconsciousness. If the patient under discussion has had a devastating stroke but is not permanently unconscious, the document itself may not provide much evidence of the patient's wishes. In this case, it will be necessary to proceed almost as if there were no advance directive. In such situations, prior discussions involving the patient, his loved ones, and physicians about the patient's values regarding prolongation of life would be extremely useful. For example, when the patient under discussion expressed the preference to forgo treatment in the case of permanent unconsciousness, he might have given reasons for this that can shed light on his likely preferences in the circumstances of the stroke.
Even when there seems to be an applicable advance directive, there may be disagreement among family members or between family members and the healthcare team regarding the patient's care. These disagreements can occur even when everyone agrees that the advance directive applies to the current circumstances. Loved ones may disagree with the content of the advance directive, believe that the patient changed her mind, or believe that the patient made an error. In these situations, it helps to focus the decision makers on what the patient would have wanted and why the advance directive was written in the first place. Healthcare providers should, however, listen carefully to evidence that the patient changed her mind. This is a realistic possibility, and patients do not always remember to destroy the advance directive or issue a written revocation.
Other times, disagreements may occur because of differing interpretations of the document. Loved ones or healthcare providers may disagree on the meaning of a "reasonable chance of recovery," for example. In this case as well, it is helpful to try to focus decision makers on what they think the patient would have wanted.
Although it is best to gain a consensus of all the interested parties, especially about forgoing life-sustaining treatment, ultimately a named proxy has the final decision. Healthcare providers who wish to override proxies based on a patient's written advance directive should be wary. It is not clear that all patients would want their proxy's or loved one's wishes overruled. Because people often write advance directives to relieve family members of the burden of decision making, the patient may not have wanted it followed if doing so would cause tremendous anguish. In a 1992 study, Ashwini Sehgal and colleagues found that over half of a group of dialysis patients thought their doctors or proxies should have at least some leeway to interpret their advance directive. Rather than taking unilateral actions against the wishes of proxies, healthcare providers might be best off consulting with the hospital ethics committee.
When no advance directive is present, decision making often proceeds in a similar fashion. Generally, the physician will initiate a discussion with those who seem closest to the patient to discuss the patient's medical situation. Physicians should then focus the family on discussing whether the patient had ever discussed similar situations and what he or she would want under the current situation. Some states have laws regarding who is the surrogate decision maker in the absence of a written durable power of attorney. In other cases, the healthcare providers should try to determine who was closest to the patient or may find it best to reach a consensus decision. Advance directives do not change this process much but are a mechanism for the patient to provide evidence about his own wishes.
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